To start off Radiothon was a HUGE success, raising over 1.8 Million Dollars for ACH! Thank you to those of you that donated to our page, tuned in or just gave us some support. The interview itself is a blur, I can't even remember what was discussed to be honest with you (aside from the basics of B obviously). I am hoping that the radio will forward me a copy as they said they could because I'd certainly like to hear it. Didn't think about the inability to throw a tape in the tape deck and hit record till the night before the interview! The great thing was hearing everyone else's stories and journeys as well and knowing that we are only one of SO many families that ACH helps each and every year (day!). Torin and Rylan both did get a chance to speak 'on air' as well (kind of) and I'm pretty sure B even made a bit of noise. Thank you so much to my wonderful friend Lorna who attended the interview with me to keep an eye on the kids for me and offer her moral support!So I know that it's been a very long time since I've blogged again and it's certainly not that I don't want to blog anymore but I have to tell you, I've not had 'real' sleep in so many months now that it has caught up with me big time. I'm in the process of completing antibiotics for Strep, Ear infections and a Sinus infection all topped off with 'flu' symptoms. The most amazing part of it? It all hit me within a few hours, from 'okay', to 'can't move because I'm shaking so bad' within hours is not fun. Apparently I'm NOT SuperWoman, who knew??
I do joke but in reality Mr.B has been keeping me up all hours of the nights since November and it is awful. B can be up anywhere from 5-15 times in a 6 hr period and it doesn't make for productive brain function for me. There are simply days where it is all I can do to 'get by' without falling over. We had a 24 hr oxsymmetry test done (tests his oxygen saturation for 24 hrs) and it was 'okay for the most part'. We've done a 'sleep test' (which was awful to say the least), picture a hospital room with a crib, bed and nowhere to go till the test is over. That's not the bad part, the bad part is there was NO sleep for me that whole night, B has one of his 'up every 10-20 min' nights and when they came in to put the c-pap (breathing apparatus) mask on for a trial period B was not happy, back arching, screaming, not happy. We still only have the prelim results from the sleep test but it too is 'okay'. He is de-sating(oxygen levels drop) at night but is coming back up within a reasonable amount of time. What's left? Well lots but the latest thing we've done (just last week) was another EEG (brain scan) to check for seizure activity while sleeping. We had the EEG done on Tues and we were supposed to meet Dr.Mineko for the results Weds but I was already deathly ill and couldn't meet with her. Michael spoke with her on the phone however and she doesn't see any major signs of him 'seizing' during sleep either. I do meet with her this week to continue the discussion and because she wants a chance to examine him again.
All this is good news, obviously, but also not so good in the lack of sleep department. When I say he's waking up, it isn't for extended periods of time (for the most part), he is seemingly looking for comfort so is it simply all of the hours, days, nights and months of living at ACH that finally caught up with us? I don't know if it is that simple as there are times when he is 'out of it' or crying with a 'pain' cry but some answers would be nice. After all this little man has been through it is only right for me to lunge out of bed and go to him without question, but I can't keep it up (oddly enough). Everyone keeps telling me that we should use Rotary Flames House so that I can get some sleep but that comes with it's own issues. If it is simply (partially?) separation anxiety how will it help to put him in a strange environment with strangers (albeit wonderfully kind ones)? Not to mention the stress it will add to Torin because he'll want to be with Braeden at RFH and stressed to the point of not sleeping himself because of that (trade one sleepless kiddo for another?). I don't know what the answer is at this point (if there is one) but that is the main reason that I've not been blogging, I've not been getting more than an hour and a half to two hours of consecutive sleep a night. When you are up three times in one hour you don't get much 'real' sleep between that. My body is also so in-tune to Mr.B now too that when he does sleep I can't get into a deep sleep because my body is prepped to wake up several times. Frustrating and exhausting. It's also not really fair to the three other males in my house that have a 'crabby' Mom (wife) so change would be good! I am trying really hard to take care of myself now (pat on the back that I've even put myself in the line up) and have cut out sugar and wheat out of my food intake and am writing a new blog about it to keep myself accountable for it but the lack of sleep seems beyond my grasp at the moment.
Another 'odd' thing is that been going on is Braeden's fontanelle is constantly low. He's not at all dehydrated, in fact I've been giving him extra water for weeks to see, but it remains noticeably low. His Paediatrician thinks it could be that the extra fluid in his ventricles (middle of the brain) has come down and the brain mass is now smaller leading more room in his skull. If in fact there are changes in his brain I'm certainly interested in looking at another, updated MRI to see what we are looking at. When we see the Neurologist on Weds she should have a good idea of why or at least what we need to look at.
The last thing we are checking out (for now) is that B's spleen is considerably enlarged and he's not gaining much weight. Your spleen generally sits up inside your rib cage on the left hand side but B's is so large now it is down to the level of his belly button. It was mildly enlarged in Jan but has proceeded to increase in size over the past month. If this has something to do with the waking I don't know but it could also have a more sinister side to it that I won't even bother hypothesizing at this point as there is no point until we have more testing done. The good news is that his CBC levels (complete blood count) are low (platelets) but still within the normal levels of low (for now). We had an ultrasound scheduled for this morning but it was cancelled last minute and rescheduled for Weds. Hopefully we'll get some much needed answers from that or at least know what other tests are needed.
On a happy note, we celebrated our oldest son's 8th Birthday in January! When I see just how far Torin has come in a few short years with therapy and love it makes my hope for B blossom.
We also ran another successful Blood Drive in Jan with 9 Donors and we'll continue to donate as often as we can with our next Donor Day being March 16th at 9am (if you can help us by being a donor that day please let me know!).
So the good stuff now:
Braeden got fitted for a standing frame in January and I was shocked once he was in it to how long he is! He was a bit unsure about the whole frame contraption but his won't be here for another few months anyhow. B did stand supported (weight bearing) once while I was holding him on my bed so he just needs to get used to the sensation of the weight on his feet. He certainly appears to prefer being 'up' where the big boys are!
He is getting more used to his hearing aides now which is great. He's still not forming words but is certainly chatty to anyone who wants to listen!
Mr.B is has now officially 'signed' his first sign language sign! I was yelling so loud that Michael came in from outside to see what had happened. B signed 'all done' (hands crossed and opened in front) when he was asked if he was all done. The funny thing is that he didn't (wouldn't?) do it again until today when he did it on two separate occasions! (Mike is still skeptical as he's not seen it) I am so impressed with him as he's still not waving 'bye-bye' but is able to process a sign? He is also now finding his toes to play with (and his g-tube which he loves to unplug and make a huge mess). Another massive achievement is that he is officially off oxygen during the day as of last week (unless napping or out of the house for long periods)! We are finally back to where we were before he fell so horribly ill in October!
BUT the most incredible and amazing thing is that he is now confidently rolling over and getting up on his hands and knees for a few seconds. I can't tell you how astounding this is (I'm getting choked up writing this), we didn't know if B would ever have any motility at all, let alone the ability to crawl and possibly walk? WOW. This kid is a constant source of inspiration and amazement! I think of all the time and energy I wasted that I put into being worried about T crawling late or walking late and what that meant (Ry then of course for early for both of them). How silly that we have a timetable in our heads that we feel our children need to follow (of course I know the time lines are there for kids that could have issues) but for Braeden he's got all the time in the world to do as he pleases and I'll be darned, he's gonna do just that!
As Feb comes to a close and the days are slowly getting longer it's easier to greet the day with positivity and hope. Spring is still a long way off (a few more months at least) for those of us in Alberta (as the snow falls outside) but I know that those of you on the West Coast of BC are already looking a blooming flowers. With Spring brings new hope, new growth and new possibilities!
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